Friday, July 8, 2016

Every storm...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am
the times over the past five days that I remembered to use the seizure tracker
to keep a record of the seizures little bear has had. I wish I could say
that after watching her seize over the past 16 months that it has somehow
gotten easier. That it doesn't make me
want to cry watching during or now, afterwards, while she sleeps because the
last one was 5 minutes long causing the app alarm to ring to tell us it was
time to administer her rescue medication. I wish there was actually some
meaning behind my words when I say, "they don't even phase me
anymore", because honestly they still break and take a piece of my heart
every. Single. Time.

No remote location, no amount of beautiful
scenery, no amount of positivity can take the sting away from watching your
baby seize while you watch helplessly. Random thoughts running through
your mind. When is this going to end? Should I have ignored Sam and
brought her suction machine anyway? How long until we should give her the
rescue medication? Why is the CBD oil stored in the refrigerator and not
next to me? Is this one causing brain
damage? Why are her hands and feet turning red and clammy? Why is
it still happening? Is she breathing...is
she going to stop?

The fear, the anxiety, the extreme panic
that occurs each and every time is probably enough to qualify me for a
prescription of diastat (rescue drug) myself. It takes me much longer
than little bear to recover, to that I say Thank you G-d. It has been
over three hours and she is most likely out for the night; thankfully not awake
reliving the experience, or in any more pain, (we gave her Motrin when she was
whimpering and restless afterwards). Me, well I sit here switching
between Taylor Swift and Gary Allan, again exhausted beyond belief and blurred
vision, sipping a glass of wine and holding back the tears that will eventually
find their way onto my pillow.

It is the nights like tonight that I HATE
thestrengththat I supposedly have. The
strength that leaves me feeling angry and sends me straight into the land of
Why? (For the record, I hate entering this land) "Why Sonze?", "Why our
family?", and the one I feel most guilty of, "Why me?" Aren't
other families that can handle this better, more gracefully, with more faith,
who are actuallystrongand don't ask why? Aren't there
others who are better equipped to deal with this? Oh, how I wish there
was a way to take a little bit of the pain and all of these feelings and bottle
them up into a glass bottle to be corked, buried, and NEVER opened.

My ability to keep on pushing through right now is in part to the lyrics in Gary Allan's "Every Storm"...

Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin'

Every storm runs, runs out of rain Just like every dark night turns into day Every heartache will fade away Just like every storm runs, runs out of rain

It's gonna run out of pain It's gonna run out of sting It's gonna leave you alone It's gonna set you free